Hope for HIE – Hypoxic Ischemic Encephalopathy Hope for HIE – Hypoxic Ischemic Encephalopathy


What should have been

In the early days after his son Grey was born, Nick Burton turned to his words to try to process the emotions he was feeling.

What resulted has resonated with so many of our families for the raw emotion and honesty in his words.





What should've been
A dream unfulfilled, but forever imagined
So unextrordinary a fantasy, unrealized
Should've been

What never was
Bonding time and cord cutting
A wheelchair ride and balloons
A clever announcement with rustic font
Never was

What was
Barely saved, Mama shaking
Just met, say goodbye for ambulance trip
Signing forms and breaking down
Papa yells at strangers to get moving

What was
Bedside longing, listening to rounds
Critical injuries to everything major
Questions answered, not comprehended
Despair and grief and just not knowing

What is
Strong baby fights to heal
One by one organs get better
Told the brain may never
Learn not to care about a prognosis
'Cause he's looking at us right now

What could be
Grey comes home to heal his parents
The gift, the dream finally
Toward days full of testing potential
And discovering what's now supposed to be
Could be

What should've been never will
But always seems better than what is
A fantasy cannot live and grow,
A dream will not sleep in your arms
Living only in the giggles of others' kids

What is now is what should be
The dream is new and more profound
More meaningful and full of hope
What could be doesn't matter
'Cause he's looking at us right now

  • Nancy Fitzgerald Calamusa
    commented 2017-04-22 10:53:04 -0400
    Beautiful, Nick!

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